Embracing the Beauty without Sugarcoating the Pain: Parenting a Child with SMS


Who would think that missing a small amount of genetic information from one chromosome could alter someone’s life, and the life of their loved ones, so dramatically?

For many parents, the diagnosis of Smith-Magenis Syndrome (SMS) is both relieving (because their child’s behavior has an explanation), and horrifying.

It’s okay to be terrified. It’s okay to be frustrated and overwhelmed and angry.

It’s okay to think- why them? Why me?

This syndrome affects every child and every family differently. You may not have suspected anything was wrong for the first few years of your child’s life. Or you may have known they were different immediately. But despite the variations, it’s a challenge for everyone who has to deal with it. Your responsibilities are triple that of an average parent, but your strength to endure the adversities is beyond admirable.

Despite the everyday challenges, there is room for optimism and hope. Try to:

  • Find the beauty in SMS
  • Find it in your child’s laughter
  • In the love they show to others
  • In their smile as they accomplish something new
  • In their happiness as they realize their own potential
  • Keep a journal of joys. Write down the wonderful moments you have with your child and reread them in times when you’re feeling despair.
  • Reach out to other parents. Read their stories. Know you’re not alone.
  • Remember that there is more to your child than this frustrating diagnosis. They are wonderful, and as they continue to grow, it’s inevitable you will too.




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